Most epilepsy surgery candidates don't opt for it

John Lund, Blend Images, Getty Images

John Lund, Blend Images, Getty Images

Anne Stein, Special to Tribune Newspapers

Living with epilepsy can be arduous if symptoms aren't well-controlled. For some people, that means medication. For others, it may mean surgery. But despite a recent study showing that epilepsy surgery can be highly effective in the long term, just a fraction of those who suffer with the seizure disorder actually opt for it.

Affecting some 3 million Americans and 50 million people worldwide, epilepsy is a neurological condition that produces brief disturbances in the brain's electrical functions that can cause seizures and other symptoms. According to the Epilepsy Foundation, in seven out of 10 cases, the cause of epilepsy isn't known; in other cases, head injuries, lack of oxygen during birth, brain tumors or infections such as meningitis and encephalitis are the culprits.

Seizures can be a tremendous burden. For those who don't respond to medication, seizures may occur daily, weekly, monthly or even less frequently, but the results can be devastating.

Those with epilepsy may not be allowed to drive, employment can be difficult and they're at risk for injuries, including falls and drowning because seizures are unpredictable.

It's estimated that 60 percent to 70 percent of those with epilepsy remain seizure-free with medication. Those who don't respond to at least two anti-seizure medications may be candidates for surgery, in which lesions in the brain that are causing seizures are removed.

Closer look at surgery

A recent study in The Lancet by British researchers tracked 615 patients. For at least one year after surgery, 82 percent were seizure-free, 52 percent were seizure-free after five years and 47 percent had suffered no seizures in a decade.

There have been studies with even higher post-surgery cure rates, from 60 percent to 72 percent, though they followed patients for less than 10 years.

"It (the Lancet study) is an important study because it gives us a long-term view of the benefits of epilepsy surgery," said Dr. Joseph Sirven, professor and chairman of the department of neurology at the Mayo Clinic in Arizona, and chairman of the Epilepsy Foundation's Professional Advisory Board. "The potential to cure epilepsy by surgery can have profound positive consequences on an individual's life. It can literally give someone their life back."

"Hundreds of thousands of people in the U.S. have seizures despite medication, so the number of people who might consider surgery is large — but only a few thousand surgeries are done per year," said Dr. John Stern, associate professor of neurology at the University of California at Los Angeles' Geffen School of Medicine and co-director of UCLA Seizure Disorders Center.

Why people may not elect surgery

There are a number of reasons people don't have surgery:

Very detailed testing of the brain has to be done at specialized epilepsy centers to make sure surgery would be safe and effective, and not all patients have financial or geographical access to those centers.

"Many people don't know surgery is available, and many will keep trying medications, not realizing that if two or three aren't successful, the likelihood that any will work is small," said Stern, a member of the Epilepsy Foundation's Professional Advisory Board.

Lack of insurance is an issue.

General physicians and even neurologists who aren't specifically trained in epilepsy (epileptologists) may not realize a patient is a candidate for surgery.

"No one wants to have surgery if they don't have to," added Stern, and because seizures are unpredictable, a patient who is considering surgery may repeatedly postpone it with the hope that the next seizure will be the last.

Though the upfront costs can be huge — from $25,000 to $100,000, said Sirven, medications, neurology appointments and ER visits over a lifetime can easily exceed that.

Less invasive, more successful

Surgery for the disorder has become much safer and effective. "The risk of dying from seizures is more than the risk of operation for the population of patients eligible for surgery," says Stern.

Surgery has been done on infants and the elderly, and if someone's a surgical candidate, says Sirven, "all best evidence points to surgery being the most cost-effective, safe and best therapeutic option for patients with drug-resistant epilepsy."

Last summer, surgeons at Texas Children's Hospital in Houston used MRI-guided laser surgery on several patients with epilepsy for the first time, allowing for a much less invasive path through the skull and brain.

"That speaks to the variety of surgical techniques available," explained Stern. "It's an improvement on an older technique, and it's encouraging to see continual improvement in surgical approaches."

"This is an era when neuroscience is exploding with information, and all of this has an effect on epilepsy and our understanding of it," Stern said. "There's a lot that's changing the treatment of epilepsy and moving it forward. For patients, even in very challenging situations, hope is reasonable because the field is evolving."